Small Bowel/Ileocecal Valve Resection: 10 months post-op and no relief

I had about 5 feet of my ileum removed along with the ileocecal valve and part of my cecum due to a cecal volvulus. I was put on Immodium for many months post-op to control the diarrhea, but perhaps this is not advisable for you due to your narrow intestines. I was recommended a book called "A Patient's Guide to Managing a Short Bowel" by Carol Rees Parrish. It is free to patients and was a great guide. Prior to my volvulus/emergency surgery, I struggled with constipation issues, so my picutre is quite different from yours, but since my journey began I have been treated for SIBO four times. Three times I was put on Xifaxin, this last time I tried an herbal antibiotic combination. SIBO symptoms can be pretty intense, so along with treatment you can try a low FODMAP diet to help things calm down. One of the most helpful things I did was to connect with a RD who specialized in GI issues. Mine is out in CA (I live in WI) but we conducted our sessions via Zoom. I was able to expand my diet and understand what foods would work best for my unique set of challenges. I pray that your new GI doctor is helpful and for relief; I know that feeling a hopelessness!

Thanks for your comment! Have you been able to manage your SIBO and find some relief? I’m glad you were able to find someone that was able to help you.

I get treated for SIBO about every 5 to 6 months currently. My risk factors (slow colonic transit, no ileocecal valve) contribute to its reoccurance. I try to follow the tips from the RD I work with to ward it off as long as possible, but I know it will be a chronic issue for me. I do have significant relief from SIBO symptoms for at least 4 months in between treatments. I follow Kate Scarlata, RD on Jnstagram as she gives a lot of helpful advice, mostly with respect to IBS, but also SIBO and the low FODMAP diet. She also has a similar story to mine with respect to anatomical changes, so I have found her and her colleagues to be of help.

So sorry to learn of your problem. I actually has my feces enclosed in a net-like something? but it only happened once. I do have IBS. My cousin has the same thing more often & has Chrohn’s. Hope you get relief very soon.

Hi blbanner,

Sorry to hear about your issues. I have also had my ICV and surrounding tissue removed (due to Crohns in my case), and have had issues with SIBO (which sounds like what you have). Especially the part you said about not weight lifting to conserve strength - I could not even imagine going to the gym and lifting with any vigor.

SIBO is tough to eradicate, and unfortunately the lauracidin they gave you is pretty mild all things considered. As you probably know, the antibiotic xifaxin is the go-to, and in my case I also needed 4 weeks of neomycin to push me over the edge and help claw back some quality of life.

If I was in your position I would request that xifaxin be prescribed. If you feel better on it or afterwards, even if it is not permanent, it is a good indication that your issue is due to bacteria. Again, be open to the idea that for tough cases, you may need to hit it with something else as well.

To manage digestion issues in the mean time, consider pivoting to a diet that is low on fermentable carbs, if you have not already. For me, eggs, ground beef, had cheeses (cheddar), and surprisingly, white pasta, works quite well, even when I was at my lowest. Rice and potatoes much less so. Fish and chicken too, but they are low in calories and take longer to prepare. "Fruit" shakes with coconut oil and perhaps a protein powder. Hope some of this is helpeful, good luck,

Hope some of this info helps you. I am missing my ileocecal valve too and found healing is slow after gut surgery. Liquid diets, cooked fruits and veggies will give your stomach a break. I ate a lot of soup while I healed. (Due to SIBO really limit your fruit intake for now).
For great info on the low carb FODMAP DIET: https://www.monashfodmap.com (their app is very helpful)
Consider doing an elimination diet to find out what is bothering you. Use chicken broth and beef gelatin to help the lining of your gut heal. Avoid bone broth as the cartilage used in making it provides a carb that SIBO bacteria can thrive on.
Check out Dr. Nirala Jacobi, BHSc, ND (USA), for info on treating SIBO. She is based in Australia but trained and worked in the USA for awhile. She is a former SIBO patient so has dealt with all of the issues in healing. Check out her podcasts too, she interviews well respected Doctors and some of the info may help you. Her website has a link to practitioners who have taken her course work: https://sibotest.com/practitioners/search
https://www.thesibodoctor.com
The current recommendation for those using natural products( herbal treatment) is to use more than one herb so you need to do some research.
Since you are missing your illeocecal valve you may have to limit carbs for the rest of your life. I am missing mine and mostly eat salads, limited beans, and limited fruit. It sure makes meal prep easy. If I eat any bread products the SIBO comes back.
Just as an example for you- I can eat 3oz of a red potato or 1/3 cup of jasmine rice once a day; any more than that causes SIBO to return. What works for you will probably be different, there is no one size fits all diet as we are all different with different problems.
Part of your research should include a search for pro-kinetics which help your stomach/small intestines to empty after meals (less time for bacteria to grow). I use ginger in capsules.
I recently added a probiotic with Lactobacillus Reuteri which seems to really be helping my digestion. So search for probiotics too, avoid those that are cultured on milk if dairy is an issue for you.
If you live in a large city you may be able to find someone trained in SIBO treatment, a lot of us have had to train ourselves.
Some people with adhesions need to keep their stool fairly thin, I hope your new gastro can address this issue for you.
Good luck!